I am not sure what I want to post tonight, but I feel like posting something.
I am trying to remain positive and for the most part its working, but then things bubble up and get so damn frustrating that it makes me want to cry or scream or something. Of course lack of voice prevents the whole screaming thing and as for crying, well dont go there.
I had my appointment today for ENT clinic today with one of the surgeons who was going to try to give me my voice back. However, he called in sick this morning and so he wasnt there. Therefore the appointment just became a tube change appointment with the nurses. (Whom I can not stand but more of that later)
I had a load of things I wanted to moan about to him and hopefully get some solutions. Things like permanently coughing up crap, waking in the middle of the night and having a 40 min coughing fit trying to get it up, pain, my referral to the other surgeon and of course my voice.
So the nurse at clinic knew about most of these problems because the nurse who has been coming to help with my dressing called her to ask if there was anything they could do as I was starting to look really rough from lack of sleep and aching form coughing. Well one nurse took my tube out while the other one wasnt in the room and the first thing she said was 'god how long have you had that tube in its looking really blocked' When I told her it was just over an hour she was genuinely shocked. So the whole tube thing went fine and then I was talking to the other nurse, whom might I add is a tracheostomy specialist nurse.
She had never heard of the covers that I had ordered for my tube as opposed to what I am supposed to wear. (I will photo one at some point) But anyway, they basically look like a big baby bib made of like foam and cotton. It keeps dust and muck out the tube while warming and humidifying the air that is breathed in. These new ones I found just cover the trach instead of half your chest, so much more aesthetically pleasing. Now these have been out for about 5 or so years and are fairly well used by a few different hospitals whose internet sites I have been scouring and yet this specialist nurse had never eve heard of them. (Im pretty sure when I trained, part of the ruling was you had to keep upto date with all aspects of your chosen field)
So anyway, my mum was telling her about my coughing all the time and her first response, oh well maybe the tube needed changing which we have done now so it should get better. My response, well it hasnt improve with the last couple of changes. To which she then decided that it was a combinations of dust, central heating and not drinking enough. To which my mum told her I drink tons any way after having a liver transplant and having had kidney trouble, I keep my fluids up (believe me dehydration sucks when you have crap veins) and that my room where I spend most the time is throughly cleaned and disinfected at least twice a week. oh and that I also had the same problems in hospital where there is no central heating. Her reply, oh well your body will settle down soon once it gets used to the tube.
At this point it took great restraint not to go an physically bang my head on the wall. I am struggling with this. This is beyond normal! My body does not do normal! Hence why a stent works for everyone else, but I end up in ICU when I have one. Why most people have a voice after a trach and I dont. All I want is some sort of confirmation that something isnt right or some suggestions on what I can do to correct it. I mean I am still exhausted all the time, I still get out of breath carrying my dinner from the kitchen to the living room and have to wait 5 mins while I get my breath back before I can eat. Something isnt right.
I am doing everything I am told. I am doing my physio, I am exercising, I am doing my nebs, I am taking my medication. But things are not getting back to normal.
I mentioned about wanting a tube that sticks out less but that I couldnt find the order code so could she have a look for me. Her reply, well if you get that type of tube you cant wear a speaking valve. oh darn it sherlock how could I have not thought of that! Not the fact that I cant (and she knows it) wear a speaking valve as I have no upper airway which you need to wear on.
And then she mentioned about tube sizes and how they gave me a smaller tube so that it would help my voice. At this point I was feeling pretty tense so I just looked at her and said (well whispered) guess what... it didnt work and I would rather be able to breathe through a decent sized airway than having a smaller one with no change to my voice. She started going on about how you cant tell the difference between tube sizes. I should have asked her how she knew. And how plenty of people have that size and manage just fine. But i have to wonder are they all elderly people who have had cancer (That is what most the info I can find on adult trachs relates to) or are they in their 20s wanting to lead an active lifestyle? And if so what the hell is wrong with me, why cant I move without panting.
I am just so fed up with the whole damn thing. They look at me and speak to me like I should be grateful that I have this tube kinda 'oh look it saved your life you should be glad your still here' and crap. But you know what, i'm not! Im angry and im bitter and im frustrated and tired. Im fed up of fighting just to get through. Cut me some slack, I want to tell them (or even do it myself) to just take the damn tube out because I have had enough with the coughing and the pain and everything else that goes with it.
Its just so bloody frustrating.
oh and joy of joy, the benefits people think I am lying to them and have made an appointment to come out and see me/ question me next week. Just what I need.
Showing posts with label fighting. Show all posts
Showing posts with label fighting. Show all posts
Wednesday, March 03, 2010
Monday, January 04, 2010
Not so Brief history of time (Part 1)
Well the trend at the moment seems to be to write about what you hope the future holds for you, your resolutions for the new year. But frankly, sitting in my hospital room, where I have been since November, but before that in and out a lot since August, I really dont feel like looking ahead. Its not all positive and rosey right now as I know there is a lot of hard work ahead. Surgery, physio, exercise etc. So instead, I have decided to give you a brief history in time. Its been a while since I wrote about my past. I mean odd snippets yes, but nothing fully since I started with the whole depression performance. blah. Perhaps to have it down on paper will make it a little more real and maybe a little more possible to leave ti where it belongs, in the past.
I had a fairly healthy family life growing up. Lived with both of my parents, my brother (who was 3 years old than me) and until I was about 6 one of my sisters (who was about 20 years older than me.) I used to love it when my sister lived at home as I shared a room with her and so used to get out of tidying it up a lot. (Somethings never change) However, she used to work full time as did my dad and my mum worked part time.
Mum expected my sister do to all the cooking and cleaning and often pick my brother and I up from school. It would have made more sense for my mum to do these things what with my sister working full time, but my mums logic was my sister had it easy as she still lived at home. My sister got in with the wrong crowd, she had a bf who was very possessive. She worked as a chef and if her bf came to pick her up and saw her talking to any other males, be it colleagues or customers, he would drive off and leave her to walk home.
But she found his company favorable to living at home and so moved out when I was about 6/7. I didnt see her again for years.
Life carried on as normal, I fought like any sister with my brother and often argued with my mum, usually about how little I was doing to help her. One day my brother decided to run away to London, I begged him to take me with him but we wouldnt. I didnt tell anybody he had gone. When they found out the police and such were phoned. He was bought back the next day no the worse for wear. We kind of bonded after that. Stopped fighting and used to comfort each other when mum had been mean. Dad wasnt around much, he worked all the hours he could, often we used to think it was to stay out of her way. I used to love it when dad came home. Because no matter how mean mum had been to me, she was normal with me again once dad came in.
When I was about 9, we received a mysterious letter. I was not allowed to know anything about the letter but mum and dad argued a fair bit about it. About two weeks later mum told me that I had another sister, but that she had left home when I was very young. She had gotten pregnant and the babies farther didnt believe it was his so he kicked her out. She ended up in a refuge. Near the end of the pregnancy he came to see her and said he would take her back if she got rid of the baby. So the baby (whom she named Samantha) was put up for adoption. Apparently my parents put in to adopt her, but my sister said she didnt want them to have her so blocked it. She ended up in the Isle of Mann.
Well anyway, turns out the letter was from my sister. She had seen us out shopping one day and decided she want to make amends. Dad had gone to visit her without my mum (how dare he go without her permission she said) but anyway, turned out she had 2 kids. I found out later that when my dad went he just sat with the kids on his knees and cried.
So he arranged for my sister(Shell), her husband (Mike) and the 2 kids to come visit us the following week. Mum was not happy about it but she did agree to it finally. And so the following friday I met my sister, brother in law niece and nephew. Things were akward at first but they came down regulary and soon it was like they had never been gone.
A couple of years later my Mum found something in my brothers room (I forget what ti was now) and asked were he got it. When the full story eventually came out, it turned out he had been visiting my other sister (Tracy) and that was were it came from. Although the parents were not happy, they knew they could not ban him from seeing his sister. When she had her third child (Who was a twin, but one died during the pregnancy) my mum sent a gift and even allowed me to go with my brother.
A couple of months later, my brother came to tell my mum that Tracys youngest baby was very ill in hospital. Her stomach had twisted inside her or something which involved a big op and along stay in Alder Hey. My mum offered to have the other 2 children while Tracy was at the hospital and so they started speaking again. I now had 2 nieces and 2 nephews.
There was always some wierdnesss between my two sisters, but I put it down to sibling riverally. When I was about 14, I started to do things that I shouldnt have been doing. I stole some poppers out of my brothers room and used them a fair bit, not really knowing what they were at this point (remember there was no internet back then so I couldnt just look it up). I also started punishing myself, I would stay up late at night mostly till about 4am but often all night, still going to school for 8am the next day. I started smoking and playing around with boys. I got into lots of fights. From there on, I started scratching myself with needle along my wrists, fantasying going deeper.
One night when I was about 15, I decided enough was enough. I took half a packet of paracetamol, wrote my goodbye note, laid down and cried myself to sleep.
When I awoke the next morning, I was so angry. Why was I still here. Sure I felt rough and couldnt keep much down, but I was still alive. I screwed my note up (Which was full of I am sorry, I wish we had gotten on better and had a normal relationship blah blah and was addressed to my mum)
I sat down the following night and took the whole packet of paracetamol. I spent most of the night heaving my guts up and generally feeling awful. Yet the next morning I still got up and went to school. About a week later, I picked up a prescription for migraine tablets from the doctors. As it was a prescription it was for a large amount. That night I took 2 full boxes.
Within 40 minutes I was heaving again. Mum thought I had a stomach bug so let me stay off school the next day, which was a good job as I spent most of the time in the loo. I felt so rotten I will never forget it. I dont know how it didnt mess me up more. The amount I took should have caused liver damage. But of course, once the sickness subsided and my muscles healed from all the heaving there were no signs at all.
I started spending as much time as possible at my sisters house (Tracy). She had moved house and we often joked about converting the extension into a room for me. My brother was working in a local supermarket, but ripping them off by stealing alcohol. He used to sell me it at a cheap rate so I used to spend my weekly pocket money on spirits and spent a lot of time drinking, even getting drunk during an RE lesson in school. Pretty soon after that he was caught out. He was sent into the bosses office to wait for the police. The boss got called out of the office for some reason and my brother stole his keys and ran out the shop. He then stole the bosses expensive car and was involved in a high speed police chase involving helicopters and such before he eventually wrote the car off. He was of course arrested and as he had spent a lot of time in the past in trouble with the police (robbing car badges and other various teenage pranks) he was sentenced to 8 months in juvenile prison. We visited him a couple of times. I missed him lots. Visiting will be something I wont forget. the whole police dogs and searching stuff.
Around here sometime, my sister (Shell) also had another baby, a girl. Her husband (Mike) beat her up one night and she rang us crying.n We went down and made sure she was ok and everything. I found a lot out about Mike that night. Turns out he had tried to sleep with my other sister a few years back and had kind of stalked her in a way. (explains the tension between the two of them) And Mike had apparently beaten my sister lots of times before and locked her out the house a few times. Of course she got her self back on her feet, but as these things tend to happen, within a few weeks, she got back together with him and it was like nothing had ever happened.
At 16, while studying for my GCSE I got a job in a shop in town. Suddenly I had money, most the study went out the window. I used to have to be in for 11 at night. So once on study leave I worked most days. In the morning I would ride my bike to my friends house and leave it there. We would then get the bus to town were we would both go to work. At the end of our shift we would meet up, get the bus back and go the local pub were we would spend the night drinking. At about 10:45 I would leave hers on my bike and ride home and make it in just before 11 (As long as I didnt wobble off the bike, which was always a possibility) This continued for a few months until I had a huge row with my mum.
After that row, I didnt physically speak to my mum for about a month, we avoided each other which suited me fine. I started saving some money (Move on to spirits instead of cocktails, much cheaper) and then I found a bed sit to rent. The place was a dump to be honest, but it was easy to get to work and I could just about afford it.
I didnt tell my family I was leaving. Didnt think I owed them anything so why should I. Left a note, basically telling her not to try to contact me and a load of selfish ramble to boot. Rang for a taxis, one of those big people carriers. Dumped my stuff in the back and officially left home.
Things were great, for a few days. Till I went into work and was told I was being fired. Apparently there had been some discrepancies in my till. I had never ever stole from work! I did consider it once, I thought about taking a pound out as I had no money to buy dinner, but instead I Went hungry. But this is what they claimed and so I was offically out of work. Now it was hard enough getting a job, but at that time of year, nowhere would hire a 16 year old as they had all the uni students looking for work.
A few days later I got my GCSE results. While I didnt do as well as I had hoped, I had done fairly well especially considering the lack of work I did. I decided to write my results down and give it to my mum. I dont know why I decided to go to her work instead of just posting it through my old house. But I had basically said that I knew the results were not good enough for her, but I was happy enough with them (which was kind of a lie) (Bear in mind that I did my maths GCSE a year early and got a B, the highest I could get on that paper and I had come higher than all but 1 of the year above me. When I told my mum her words wre "I dont know why your celebrating, you could have done better, why didnt you get an A" so my assumptions were not totally incorrect)
Anyway, my friend who I asked to deliver the letter decided to tell my mum I was outside so she came out. We had a begruding hug and a cry. She asked me to come home I agreed as I didnt have a choice with having no job. She then gave me some money to buy some food and such with.
The first thing my friend and I did was buy some stuff for a fry up ha. That night we went out clubbing with the rest of my class. My friend and I decided that we would go to a different club from everyone else as we wanted to do some drugs but didnt want the whole school finding out. While out I started dancing with this boy, Kieran. We got on ok and such and my friend decided that I should lose my virginity before moving back home. ha. Seemed like a good idea at the time. We had no taxis fair so we were going to walk but then kieran said he had money and so we invited him back. My friend eventually fell asleep on the sofa in my bedsit while I was cuddling with Kieran. Still high as a kite and drunk to boot, I slept with him.
Had to kick him out early the next morning after getting his number as my parents were coming to collect me to take me home again. and so I moved home. But not for long...
I had a fairly healthy family life growing up. Lived with both of my parents, my brother (who was 3 years old than me) and until I was about 6 one of my sisters (who was about 20 years older than me.) I used to love it when my sister lived at home as I shared a room with her and so used to get out of tidying it up a lot. (Somethings never change) However, she used to work full time as did my dad and my mum worked part time.
Mum expected my sister do to all the cooking and cleaning and often pick my brother and I up from school. It would have made more sense for my mum to do these things what with my sister working full time, but my mums logic was my sister had it easy as she still lived at home. My sister got in with the wrong crowd, she had a bf who was very possessive. She worked as a chef and if her bf came to pick her up and saw her talking to any other males, be it colleagues or customers, he would drive off and leave her to walk home.
But she found his company favorable to living at home and so moved out when I was about 6/7. I didnt see her again for years.
Life carried on as normal, I fought like any sister with my brother and often argued with my mum, usually about how little I was doing to help her. One day my brother decided to run away to London, I begged him to take me with him but we wouldnt. I didnt tell anybody he had gone. When they found out the police and such were phoned. He was bought back the next day no the worse for wear. We kind of bonded after that. Stopped fighting and used to comfort each other when mum had been mean. Dad wasnt around much, he worked all the hours he could, often we used to think it was to stay out of her way. I used to love it when dad came home. Because no matter how mean mum had been to me, she was normal with me again once dad came in.
When I was about 9, we received a mysterious letter. I was not allowed to know anything about the letter but mum and dad argued a fair bit about it. About two weeks later mum told me that I had another sister, but that she had left home when I was very young. She had gotten pregnant and the babies farther didnt believe it was his so he kicked her out. She ended up in a refuge. Near the end of the pregnancy he came to see her and said he would take her back if she got rid of the baby. So the baby (whom she named Samantha) was put up for adoption. Apparently my parents put in to adopt her, but my sister said she didnt want them to have her so blocked it. She ended up in the Isle of Mann.
Well anyway, turns out the letter was from my sister. She had seen us out shopping one day and decided she want to make amends. Dad had gone to visit her without my mum (how dare he go without her permission she said) but anyway, turned out she had 2 kids. I found out later that when my dad went he just sat with the kids on his knees and cried.
So he arranged for my sister(Shell), her husband (Mike) and the 2 kids to come visit us the following week. Mum was not happy about it but she did agree to it finally. And so the following friday I met my sister, brother in law niece and nephew. Things were akward at first but they came down regulary and soon it was like they had never been gone.
A couple of years later my Mum found something in my brothers room (I forget what ti was now) and asked were he got it. When the full story eventually came out, it turned out he had been visiting my other sister (Tracy) and that was were it came from. Although the parents were not happy, they knew they could not ban him from seeing his sister. When she had her third child (Who was a twin, but one died during the pregnancy) my mum sent a gift and even allowed me to go with my brother.
A couple of months later, my brother came to tell my mum that Tracys youngest baby was very ill in hospital. Her stomach had twisted inside her or something which involved a big op and along stay in Alder Hey. My mum offered to have the other 2 children while Tracy was at the hospital and so they started speaking again. I now had 2 nieces and 2 nephews.
There was always some wierdnesss between my two sisters, but I put it down to sibling riverally. When I was about 14, I started to do things that I shouldnt have been doing. I stole some poppers out of my brothers room and used them a fair bit, not really knowing what they were at this point (remember there was no internet back then so I couldnt just look it up). I also started punishing myself, I would stay up late at night mostly till about 4am but often all night, still going to school for 8am the next day. I started smoking and playing around with boys. I got into lots of fights. From there on, I started scratching myself with needle along my wrists, fantasying going deeper.
One night when I was about 15, I decided enough was enough. I took half a packet of paracetamol, wrote my goodbye note, laid down and cried myself to sleep.
When I awoke the next morning, I was so angry. Why was I still here. Sure I felt rough and couldnt keep much down, but I was still alive. I screwed my note up (Which was full of I am sorry, I wish we had gotten on better and had a normal relationship blah blah and was addressed to my mum)
I sat down the following night and took the whole packet of paracetamol. I spent most of the night heaving my guts up and generally feeling awful. Yet the next morning I still got up and went to school. About a week later, I picked up a prescription for migraine tablets from the doctors. As it was a prescription it was for a large amount. That night I took 2 full boxes.
Within 40 minutes I was heaving again. Mum thought I had a stomach bug so let me stay off school the next day, which was a good job as I spent most of the time in the loo. I felt so rotten I will never forget it. I dont know how it didnt mess me up more. The amount I took should have caused liver damage. But of course, once the sickness subsided and my muscles healed from all the heaving there were no signs at all.
I started spending as much time as possible at my sisters house (Tracy). She had moved house and we often joked about converting the extension into a room for me. My brother was working in a local supermarket, but ripping them off by stealing alcohol. He used to sell me it at a cheap rate so I used to spend my weekly pocket money on spirits and spent a lot of time drinking, even getting drunk during an RE lesson in school. Pretty soon after that he was caught out. He was sent into the bosses office to wait for the police. The boss got called out of the office for some reason and my brother stole his keys and ran out the shop. He then stole the bosses expensive car and was involved in a high speed police chase involving helicopters and such before he eventually wrote the car off. He was of course arrested and as he had spent a lot of time in the past in trouble with the police (robbing car badges and other various teenage pranks) he was sentenced to 8 months in juvenile prison. We visited him a couple of times. I missed him lots. Visiting will be something I wont forget. the whole police dogs and searching stuff.
Around here sometime, my sister (Shell) also had another baby, a girl. Her husband (Mike) beat her up one night and she rang us crying.n We went down and made sure she was ok and everything. I found a lot out about Mike that night. Turns out he had tried to sleep with my other sister a few years back and had kind of stalked her in a way. (explains the tension between the two of them) And Mike had apparently beaten my sister lots of times before and locked her out the house a few times. Of course she got her self back on her feet, but as these things tend to happen, within a few weeks, she got back together with him and it was like nothing had ever happened.
At 16, while studying for my GCSE I got a job in a shop in town. Suddenly I had money, most the study went out the window. I used to have to be in for 11 at night. So once on study leave I worked most days. In the morning I would ride my bike to my friends house and leave it there. We would then get the bus to town were we would both go to work. At the end of our shift we would meet up, get the bus back and go the local pub were we would spend the night drinking. At about 10:45 I would leave hers on my bike and ride home and make it in just before 11 (As long as I didnt wobble off the bike, which was always a possibility) This continued for a few months until I had a huge row with my mum.
After that row, I didnt physically speak to my mum for about a month, we avoided each other which suited me fine. I started saving some money (Move on to spirits instead of cocktails, much cheaper) and then I found a bed sit to rent. The place was a dump to be honest, but it was easy to get to work and I could just about afford it.
I didnt tell my family I was leaving. Didnt think I owed them anything so why should I. Left a note, basically telling her not to try to contact me and a load of selfish ramble to boot. Rang for a taxis, one of those big people carriers. Dumped my stuff in the back and officially left home.
Things were great, for a few days. Till I went into work and was told I was being fired. Apparently there had been some discrepancies in my till. I had never ever stole from work! I did consider it once, I thought about taking a pound out as I had no money to buy dinner, but instead I Went hungry. But this is what they claimed and so I was offically out of work. Now it was hard enough getting a job, but at that time of year, nowhere would hire a 16 year old as they had all the uni students looking for work.
A few days later I got my GCSE results. While I didnt do as well as I had hoped, I had done fairly well especially considering the lack of work I did. I decided to write my results down and give it to my mum. I dont know why I decided to go to her work instead of just posting it through my old house. But I had basically said that I knew the results were not good enough for her, but I was happy enough with them (which was kind of a lie) (Bear in mind that I did my maths GCSE a year early and got a B, the highest I could get on that paper and I had come higher than all but 1 of the year above me. When I told my mum her words wre "I dont know why your celebrating, you could have done better, why didnt you get an A" so my assumptions were not totally incorrect)
Anyway, my friend who I asked to deliver the letter decided to tell my mum I was outside so she came out. We had a begruding hug and a cry. She asked me to come home I agreed as I didnt have a choice with having no job. She then gave me some money to buy some food and such with.
The first thing my friend and I did was buy some stuff for a fry up ha. That night we went out clubbing with the rest of my class. My friend and I decided that we would go to a different club from everyone else as we wanted to do some drugs but didnt want the whole school finding out. While out I started dancing with this boy, Kieran. We got on ok and such and my friend decided that I should lose my virginity before moving back home. ha. Seemed like a good idea at the time. We had no taxis fair so we were going to walk but then kieran said he had money and so we invited him back. My friend eventually fell asleep on the sofa in my bedsit while I was cuddling with Kieran. Still high as a kite and drunk to boot, I slept with him.
Had to kick him out early the next morning after getting his number as my parents were coming to collect me to take me home again. and so I moved home. But not for long...
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